Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Tag: fear

Facing exhaustion head on

arguing BCI slept better, excellent start! Although I feel so empty, the tank is not only empty but there is both dust and cobwebs in there. I have nothing in my calendar or diary today so bed seems like an awesome option.

I am really fighting with myself.  I am craving carbs, I have noticed I do this whenever I feel so low in energy, it is such a hard thing to fight. I have no fight in me for a start so pasta, bread, sugar all of those wicked quick surge, bad for me foods are all I want :(

I have decided to just go with the flow during chemo, it is hard enough getting through each day without placing some unrealistic expectation on myself to eat things my body is repelling. I am eating well when I can and supplementing each day so I will get through it.  Funny it took me 3 months to work out I should just go with the flow.

So as you can imagine, today is not a great food day. I am self-medicating so to speak but not in a good way. The pain I have in my knees and hips is simply ridiculous. I don’t know what to do with myself.  I am craving comfort food like a puppy craves a warm hug.

I’m battling those horrid thoughts of metastases in my bones with the aching. I know it’s a head game, but gosh it’s hard.  Watching my Mum go through bone cancer, knowing I have the same disease, having such aching in my bones and joints, it really does mess with me.

I got a lovely heart lifting surprise today with a soft knock at the door waking me from a deep toxic sleep.  When I open my front door, there is a beautiful bunch of flowers from my 4N family. These guys are the best. 4N is a small business networking group I have been a member of for 12 months.  If you have never heard of them before check them out here.

I remember when I was first diagnosed I was called and asked what could they do? They offered to make phone calls, any paperwork, client calls. I was blown away. Apart from a few very close friends, no one else offered this and it meant so much to me.

In my efforts to be somewhat productive, I made a list of jobs I needed to get done. Funny, when I say needed, it is to fill this weird sense of showing my value.  I have already confessed to how bad I feel and that I am going wight he flow yet I am cleaning things????  Don’t worry if you are confused too join the club with me.

So today I cleaned the plastics / storage container cupboard and also the pots and pans cupboard.  Such a small job really, but so exhausting for me. I do feel better consciously for doing so but physically I am back on the mattress, nothing to give.

So after a rest, making dinner for the family, I am back in bed, exhausted needing sleep. I pray that I can sleep tonight and I am thankful, so thankful that tomorrow is a new day.

 

Yay! It’s Chemotherapy day!!! Part 2

chemotherapy picChemotherapy is so toxic. It attacks and kills not just cancer, but also all the living, healthy cells in the body and completely cripples the body’s immune system. – www.cureyourowncancer.org

So as the real chemotherapy enters my body I actually do get a headache and begin to feel nauseous. Now I am second-guessing myself, is it real or am I Imagining it? I ensure that we ask every question we have and take notes. Marc has to do this as I am still wearing the ice gloves.

I feel a little more relaxed, there is some tingling in the hands and feet, we advise the Nurse as this is a bad sign and they slow down the delivery of the drugs. I look around the room to notice that cancer is completely indiscriminate. There are young and old here, men and women. All at various stages, some with hair, some without. Some look otherwise normal, some look really sick.

Marc and I have strangely enough had fun today, we have laughed, talked, joked about. It’s been rather lovely really. Apart from the fact I have a raging headache, feel like I want to vomit and have a weird buzzing pain all over my body, I have had a lovely day.

We have spoken bout he possibility of the new edition to the family in the form of a pup. Marc states that he really didn’t intend to suggest we bought a puppy. I ask him honestly how he feels and he is quite excited. He just won’t show it.

I suggest we just go and look at her and ask some questions. For example how do we ensure that the pup and our older dog get along? We cannot upset our older dog, he has been with us for 14 years.

So we agree that we will pop in and have a look at the pet store. After all we need to head the get some drugs from the chemist, I need a combination of uppers and downers, inners and outers, drugs to make you go potty and drugs to stop you, what a mess.

My tummy is percolating as we leave at 5pm and head to the shops. My body is buzzing and everything feels really surreal. I am in for a ride I reckon.  I determined to remain calm amidst the storm.

A New Year dawns

sunrise & jettyIt’s the 31st of December 2103. Everyone except me goes to the beach and I go to my sister Gerri’s. We just hang out and talk and spend time it is really nice, we also go to lunch with some really close friends of hers. I just did not want to go to the beach with my wound still being so sore, the heat is just not compatible with how I feel, and I certainly wont be going near the water just yet.

So I have a lovely day with my sister Gerri, she is a cancer warrior herself and is an inspiration to me. She has had a double mastectomy and has not had reconstruction. We laugh together about the down side to prosthetics. No matter what you do or how you do it they wander. I am sure when I wear mine it has a goal to be a shoulder pad, it always works its way up my chest to the wrong place.

My sister laughs and talks about how hers usually work themselves together into the middle of her chest, still not a good look! At least we can laugh hey!

New Years Eve comes and goes; it feels so surreal. I’ve never been a real fan of NYE, I am the sort of person that believes when you need to change just do it, don’t wait until a new year comes along think of all the time you’ve wasted!

We spend New Years Eve with my family. The kids have a ball, the adults sit and drink, reminisce, laugh and then as soon as midnight strikes we head home completely stuffed!!! I just have no energy at the moment.

I wake at 3am in our friends house having the most incredible night sweat that I can hardly breathe. I get up; go to the loo, splash water on my face and then curl up in the lounge room where it is a little cooler. They have air con but it is ducted and they don’t have it on so I don’t want to turn it on. I lay out in the dark lounge room for hours until I can go back to bed.

Eventually morning comes and Marc wakes up. He reminds me that I need to start taking the Dex (dexamphetamine) in preparation  for the chemo. It hits me, “SHIT chemo starts in 2 days.” Oh man, it didn’t feel real until right now.

I take the dex and a few other supplements I need to begin to take and I am feeling really emotional, like “stop I want to get off, but I can’t. I go and have a cry our friend comes in and spends time with me. She reminds me that no matter what – my mind cannot be touched. My body can be cut and poisoned, but my mind is mine. I can spend time with God, I can focus on whatever I choose too and it will be ok. What a powerful reminder!

We decide to head back home today in the afternoon so we have two sleeps at home before treatment starts. The trip home is peaceful; we are both in our own heads thinking, wondering, “what if” ing.  It is nice to be home in our own bed.  There is some type of unspoken security about your own bed.

 

 

It’s all too draining

quotes1Saturday  7th  December

Marc and Monica go to South Australia for the weekend. I am home with Sam for the weekend, I thought no problem I won’t be doing much. On the first morning that they are away I am innocently in the bathroom having a wash.

All of a sudden I notice that there is a strange sound. As I am standing there I notice that the length of drain that was inside my chest has fallen onto the floor! I didn’t really feel anything. But I am looking at this thin king “now what do I do?”

I guess it wants to come out; I am not sure what to do? I call my sister who is a medical professional, she is always great for advice, she does not answer, Marc is in mid air, I can’t put it back in, I decide to call the nurse. They say they will be there asap, they come 2 hours later. I have put a dressing over the top as it is oozing, lovely!

I am skipping about the house as much as a one boobed sore woman can skip, trying not to panic. I am sure I look like an epileptic cockroach. Oh well Sam is sleeping in so there in no audience.

The nurse arrives, she is calm so then I begin to calm down too. The drain is out, the dressing is removed from my chest. I must say it is freaking me out, the scar is healing well but it looks like the 2 edges of skin are just resting together and can open any time. I begin to have these visions of the flesh parting, it’s horrible.

My wound is so sore, I thought they said when the drain comes out I will feel better I am just as sore if not sorer. It may be due to all of my jumping about previously in a panic.  With time, as the drain pain lessens, I can move a bit more freely without the bag attached to me.  I no longer look like a lost librarian with my shoulder bag.  I feel like I am beginning to make some progress.  Yippee!

 

 

Something’s Gotta Give

breaking-point

Friday 29th November

So it is the day after my mastectomy.  I am sore, my chest is hard to see because of the dressing but the place where my right breast should be is a concave weird place. You think that without a breast you will look like a man, but you look hollow, almost dug out. It is weird to look at myself, hollow one sided chest and black eye, what a sight!!

Marc brings Samuel into see me today, he has to drag him in as he is frightened of what he may see. He is surprised to see that I still look like his Mum. Bad hair, drawn face but still his Mum. They need to get off to their days of school and work  so they leave me to rest.

I decide to write to the GP who would not support me in my search for answers. I decide that something needs to be said. I wonder how many others have been stifled or not pursued treatment after such a negative response. I could have so easily not pursued things with another Doctor. After all what if I was just being a whiner?   Despite feeling so bad sometimes you lie to yourself and tell yourself it’s not worth pushing, after all it is probably nothing, you just need to toughen up princess.

Have you ever discounted yourself like that? I know I have for a very long time. I think it’s part of the process that we go through at times when life gets busy and we start to lose ourselves. Particularly, those of us who have many roles. Here I am Kylie the Mum, Wife, Step mum, Business owner x 2, Sister, Friend, Colleague. I know most women who have had children can begin to lose their identity. I think its because we just get used to putting everyone else’s needs before our own. I mean in our house even the pets get fed before I do.

But this will need to change, I am realising that whilst there is a big part of this situation for me that is genetic, there is also a big part that relates to lifestyle I am sure. I have been putting myself last for a long time, not taking time for my self or care of myself. The funny thing is that no one asked me, or even expected me to, I just did it. Like being a good Mum and Wife means you come last.  Where does that message come from?

Again, my kids or Husband never said this to me, I just allowed it to happen. I passively stood by and decided that what I wanted or needed didn’t matter. How did I end up here?

It made me think back to earlier this year when I was asked by a Counsellor “what makes you happy?” When she asked me I sat there dumb founded thinking I have no idea, I burst into tears because it hit me just how sad that was. The worse thing is I am not the only loser here, so is anyone close to me. They don’t get the best of me either, just the chewed up spat out version.

So laying in a hospital bed, I have much time to think about my future and to think about how differently I am going to live my life. I only get one crack, I have much to offer and much more I wish to achieve in this short adventure on planet earth.

I decide I want to do life laughing, running, having a ball rather than depressed, run down and dragging my feet. So things will change, I will need to prioritise both my physical and emotional health. In doing this I will be able to be there for those special people in my world.

How this change is going to happen is another story and I am sure will be a long and evolving process.

 

 

 

It’s C Day

faith quote

Tues the 19th November 2013

It’s 9 am and we go to the breast surgeon, my preferred Doctors colleague. My first choice for a breast surgeon is on holidays and we can only see his colleague.  We arrive eager to get the results only to be told it’s not today its tomorrow!  I want to cry.  I really don’t know how that happened!  I go home and wait.  I cannot describe the frustration and helplessness that I feel. The time passes so slowly, its almost like I feel like I need to make every decision but you also can’t make any because I don’t know what the outcome is.  Again a very unproductive and emotionally painful day.

The following day Wednesday, we go to our appointment, a young Chinese doctor sees us.  The moment i see him i feel like the answer is not going to be good.  He looks at me says, “ it’s cancer, it is what it is.”

He then turns from us and with his back to us mumbles, “take a moment if you need too.”  I feel like offering him some training in how to deliver life changing news!  Honestly!    Marc grabs my hand but I am strangely calm.

One some level I am shocked but not hugely because I feel like I have known since the radiologist went quiet on Saturday. He says to Marc and I, “Hey we need to biopsy the other lump Kerry”. (My name is Kylie) and I say “What about the third lump?” – he says “hang on let me read the report, oh yeah lets get both done now.”

Well I’m sure you can imagine what has just happened to my trust level in this young man, zero!!!! First he gets my name wrong, then he hasn’t read the report and could have let a third biopsy be forgotten and he wants to touch my boob!  I don’t think so….

He also says, “I will do a lumpectomy next week.”   I say “I want a mastectomy” and he says “I don’t think we need to go overboard!”  I am spinning thinking I have two time bombs on my chest here, I saw my Mum die over a very long slow and painful process, my sister is going through it and you say don’t over react!!!!

I go back to my friends at radiology, my friend cranky pants the angry receptionist greets me with a hug this time and I get the other biopsies done.  Again the staff at radiology are so lovely and gentle, they treat you with such dignity and care it makes a horrible process so much more bearable.  I am to see the breast surgeon who doesn’t know me from Adam again on Monday the 25th to get pathology results and confirm the plan.

Marc takes me to out favourite local restaurant at Brighton by the water for some lunch.  Ia m not hungry I have such a knot in my stomach.  We begin to make those first phone calls to family and close friends, the people we are going to need the most support from.   I am becoming quite emotional and am trying to hold it together.  The poor waitress is trying to serve us but realised something quite big is going on so she circles too afraid to approach.

What a weird day, I am calling people telling them that I have cancer, it is surreal.  They all read differently, some are strong for me, others I need to be strong for them.  Some have very strange reactions and in their shock say weird things like ” well at least you’ll lose weight with chemo,”  I breathe deeply and just think, “It is their shock speaking, they don’t mean it, who would say that seriously!”

We eat, we talk, both of us are keen to seek a second opinion, but are also keen to get the results back form the other biopsies.  The weight on us is tremendous.  We are both drowning in the “what ifs.”

So from Wednesday to the following Monday we wait, we know I have cancer but we don’t know anything else. As you can probably imagine this is a weird time, we don’t sleep much, we talk a lot, we contemplate things more, differently, I am trying to wrap my head around what I need to do practically with my work and life.

I feel like my works has been placed on hold but also on fast forward.  I start to think about all the things I haven’t done but want to and need to do.  I think “oh Geeez, I don’t have a will in place, I have not made it clear about what would happen to Sam in the event of my death.”  Big questions to contemplate.  Then I also have this beautiful confirmation that I will be ok, I will get through this.

To say I am confused, bewildered and overwhelmed is the understatement of the century.